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Amy’s Story

Grandad had always been well spoken, articulate, very private and fiercely independent.

He had lived on his own for 35 years, after bringing my Dad up almost single-handed from the age of six, spending his weekends with his long-term partner, Marion.

His routine was always the same; Tuesday with his sister, and Friday or Saturday coming to see my Dad and us, his three grandchildren. He would mow the lawn in smart trousers and a shirt, walk up to the town a number of times a day to buy his paper and sweets and often take himself out for a curry thanks to his incredible appetite for things that weren’t so good for his waistline.


Early signs

The first thing to go was his speech. It was almost like the words were on the tip of his tongue but he could not push them out of his mouth and when they did come out, he was very softly spoken. He would say goodbye mid-sentence and put the phone down mid-conversation.

The next thing that changed was his emotions. He began to cry when he saw us and started to cry mid-conversation when we were talking about something unemotional.

He also became unkempt which was so unlike him. He then lost all sense of time and would often go wandering in the early hours. A catalogue of falls and hospital visits made us all realise that him moving to a nursing home was inevitable.


The diagnosis

A number of consultants, some supposedly the best neurologists in the South East, and GPs either missed the diagnosis of PSP or did not know what PSP was to diagnose it. Sadly, a very private man had to explain his symptoms over and over again, was subjected to numerous tests and, at times, we were all given false hope that we had some idea what he was facing.

When we got told that Grandad had PSP, I had no idea what it even meant. The first thing that came up on Google was the PlayStation website.

We got in touch with PSPA to get some advice and guidance. PSPA was incredibly helpful and useful as were the PSP meetings, which we attended locally to us.

One time I told a consultant Grandad had PSP and the consultant had no idea what it was. Luckily, I carry PSPA fact cards but I remember the perplexed look on the consultant’s face whilst he was reading it. He still wrote on Grandad’s notes that he had dementia.

I am sure that had Grandad been diagnosed earlier, we would have had the benefit of earlier advice that would have made life a bit easier for him.

Unfortunately, the move into a nursing home was not a seamless transition. They already had a patient with PSP and we thought this would result in better care. Sadly, this was not the case. We moved Grandad to where he is now and he has a visitor most days.


Today

Grandad is only able to speak a few words and unable to walk without assistance. The falls have declined due to his mobility declining. He always has a terrible cough and his swallowing is a significant problem although his appetite remains incredible (and he still often has seconds for pudding!).

He seems to be at his best when he looks his best; clean shaven with aftershave, haircut and nails clipped. My sister, Grace, is a beauty therapist and is often on hand to spruce him up.

In the six years since his diagnosis, a lot has changed for us. My Dad has got engaged and Grandad has become a Great Grandad following the birth of my niece, Eva. His face lights up when he sees her or a photo, and although he cannot communicate, he knows who she is.

I am due to qualify as a solicitor in September and hope to specialise in private client work so that I can help families plan for the future when faced with a degenerative condition.

Heartbreaking does not come close to how difficult it is to watch his decline but I take comfort in the thought this article may help others and their families through a difficult time and that through my work, I can also help families in a time of need.

Raising awareness of PSP has now become a mission for me; early diagnosis will help raise awareness of what can only be described as a terrible illness and encourage funding towards finding a cure.

Grandad may not act the same but the smile and wave when he sees us and the few times when he manages to tell me he loves me make me realise that, deep down, PSP has not taken everything away from him.


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